Tag: hypo

4 Mothers, 4 Questions (Part 3)

Summer 2017 is nearing an end and it is time to put pen to paper once more. Today we meet Eline Baumgart-van Buuren, mother of 5, (yes, FIVE :-)) children. The youngest, two beautiful twin daughters, both have coeliac disease and one of them is Diabetic Type 1. Eline shares her story with us today. [Nederlandse versie onderaan]

What is your child’s diagnosis story?

My daughter is an identical twin. She is a happy and exuberant girl. At birth, she was the larger, stronger of the two. Everything went perfectly well until her second year when her appetite reduced tremendously. At that time she also suffered from two ear infections, for which antibiotics were prescribed.

In the mornings, she would eat well and lunch was usually OK too, but by the evening dinner, she had lost all interest. Trying to encourage her with something I knew she liked to eat also didn’t work, it went untouched. Then she began to drink a lot more and to pee so much it overflowed the diaper. She would often ask for more fluids during the night too. She became listless and lacked energy. Despite describing all these symptoms to our health carer, while at the same time watching her weight and growth curve become very slow, we were not given any advice.

One Friday night, borne from our own intuition, we decided to visit the out of hours doctor. They listened to our story and drew blood from our daughter. The results showed an excessive level of glucose and we were referred straight to hospital with a diagnosis of Diabetes Type 1. When our twin daughters turned four, they were also both diagnosed with Coeliac disease.

How did you feel when you heard the diagnosis ‘Type 1 Diabetes’?

When the doctor told me that my daughter had Diabetes Type 1, I didn’t really know anything about it. As my daughter fell asleep hooked up to an intravenous line, I scoured the internet for more information about her diagnosis.

The first thing I read was that there is no cure – that wasn’t a great moment for me: a self-proclaimed control-freak. When I realized that I couldn’t protect my child from this chronic disease I found it very difficult to accept. But even then, I had no idea the impact this disease would have on our lifestyle and activities.

We were quickly buried deep in a mountain of instructions and advice and our entire family life was thrown upside down. There really isn’t any time to assess and deal with your own personal emotions at this time, you just have to focus on being there for your child. That all comes later.

In your opinion, how could improvements be made to the diagnosis process in the future?

In retrospect, I believe the health carer should and could have been more alert to all the signals and symptoms that led us to the diagnosis. If there were any doubts, the health carer should have referred us because they are dealing with very small infants. I also think that taking a quick blood glucose or urine test when these symptoms are described should be standard in health care centers and GP surgeries. I did go back to the health care center after my daughter’s diagnosis, sadly, I was met with a rather lukewarm response. But simple, non-invasive tests like these can not only save time, they can save lives.

I am not sure about the impact of awareness campaigns but I do believe that tackling the issue at the point of contact with the health care system makes sense to ensure faster diagnosis and improved intervention.

If you could share one piece of advice to other (non-T1D) parents around the world, what would it be?

I am a firm believer in parental instinct. A parent knows their own child! If your child shows “abnormal” behavior; is constantly tired; has a symptom that lasts much longer than a “childhood phase”; or even if you suspect something is wrong but you don’t quite know how to put your finger on it then go to your GP straight away. Read up about your concerns and don’t let the symptoms continue too long before seeking professional advice. Often the symptoms will be nothing or very quickly and easily resolved. Too many of us are afraid to ‘waste our GP’s time’ – but I say it is better to waste 5 minutes then discover the diagnosis when your child is in a coma. Be smart and follow your feelings, we were just in time.

Any final words?

My husband and I, we are people who like to read and discover things, but not everyone is. I think it would be really helpful if the Diabetes Nurses were aware of and able to point parents in the direction of support groups, either on Facebook or in the local area. A diagnosis like this can easily become overwhelming for many parents and this is where the Diabetes Nurse can quickly step in and support these parents by connecting them to others in the same situation. At the end of the day, the child’s health is the central point here but building a strong support network around the child is critical and it starts with the parents.